Need Advice - Scanxiety
 

Hello All - I've been hanging out since I started treatment in Jan. I haven't said much about my situation but I have made tremendous progress on Herceptin, Perjeta and Taxol. CEA is my marker that works and it has gone from 400 to 1.4. An intermediate scan in March showed everything resolved except for a spot in the liver that still lit up a bit. I made it through 12 weeks of taxol, pulled off due to neuropathy that has improved a lot since stopping. Now I am just on the Herceptin and Perjeta. So all should be good....But I am so nervous about the scan on Monday. I understand now what you all are talking about with the scans....I did get some Ativan and that helps.

I am also worried about brain mets. I am thinking of asking my onc for an MRI. I had a clean one in Jan. For those of you that have had brain mets, did it show in your tumor markers? My onc does not do an MRI unless there are symptoms. What advice might you have for me on this? Thanks in advance and I really appreciate the help from those of you that have more experience and are so kind to share this with me!

Dizzy

Re: Need Advice - Scanxiety
 

Dear Dizzy,
No real answers in regard to scanxiety - after almost 2 years stable on Herceptin and Tamoxifen, I get all steamed up every time! Just breathe deep! Sounds like the taxol has done its job and you will be fine.
I share your uneasiness about brain mets, as my oncologist has the same attitude. I guess you could say why look for trouble? But I would also be interested in feedback about the markers from women who have had brain mets.
I hope all goes well next Monday, and will have all digits crossed.
Best wishes.... Pam

Re: Need Advice - Scanxiety
 

More than once I have turned to the ladies on this site to help me thru scanxiety. So you have come to the right place. sometimes just knowing others feel the same way is a big help. I think we all go thru times when we just want some solid answers to hang on to. Hang in there Pamelmary is right - just breathe and remeber you are not alone. Good luck on your scans

Re: Need Advice - Scanxiety
 

Same here - CT scan to determine whether chemo was successful after 6 times THP on Monday, results on Wednesday. Please cross your fingers for me! I have back pain that I currently blame chemo for, or maybe it's scanxietey... I can't even think about if it's not...

Annette

Re: Need Advice - Scanxiety
 

Thank you lovely ladies for your kind words, it really does help to know I am not alone in all of this! I had a nice surprise, my daughter came home from college to spend the weekend with us! This has helped to keep my mind off the scans.

Annette - I guess we are scan buddies! I'll keep my fingers crossed for the both of us! Best of luck to us!

Re: Need Advice - Scanxiety
 

Hi DizzyDo,

Thank you! I'll cross my fingers for you, too! And all toes that are not subject to neuropathy - right foot only! ;-)

Hope for the best for both of us - I have a little one (5 1/2 years old) and feel horrible when I think of having to leave her soon. But then: don't we all, the age really is not that much of a factor...

Bone mets are apparently not easy to stage - in the staging after 3 rounds of chemo I was told by one doc that there was progress and to go on T-DM1. Turned out they used to different CTs ("angles", I mean) and interpreted sclerosis at the margins as progression. I got a second opinion and then eventually kept going with the chemo. I really hope I made the right decision...

Re: Need Advice - Scanxiety
 

Hi Dizzy,

It's normal to have anxiety before the ct scans, you will be fine-- everything indicates-- based on the tumor marker that you will see excellent results.

A far as the MRI, you need to ask the doctor to send you for a brain MRI at least once a year. The tumor marker won't tell if you have cancer in the brain, is mostly to measure the cancer activity in the body.

The reason behind having the brain MRI's is to treat the brain lesions when they are small, once the lesions appear too long, the oncologist radiologist might want to perform a whole brain radiation. This is something you don't want, it may take years for one to develop too many spots in the brain before going that route.

Put your foot down, tell your doctor what you want- is your life, your body.

If necessary change doctors, you want a compassionate and sensitive doctor who listens to you. You already have a lot on your plate to deal with someone who does not care about your wants and won't listen to you.

Please, keep us posted.

Hugs,

Adriana

Re: Need Advice - Scanxiety
 

I get scanxiety too. I tell myself "it's just information." I tell myself that knowledge is power. I tell myself I feel fine and everything should be fine. And that works, but not perfectly. A little anxiety still breaks through now and then. One thing that works for me, though probably not for many other people, is to imagine the worst that could happen. I'm still at the "let's try this other drug" phase, not the, "we've run out of options" phase, so I think about that and then decide I can handle that. That might be a bit too much reality for some people, though.

It sounds like you're doing fine. Since you had tumor markers and now basically have none, that's a very good sign.

Just do whatever you need to do to distract yourself or pamper yourself. It'll be OK.

Re: Need Advice - Scanxiety
 

Thank you all for the support! Adriana - thank you for the advice, I will talk to onc later this week and discuss my concern. Amy - I like your strategy! I do that sometimes too, I call it my plan for the worst, hope for the best approach. I find I am better prepared when things go wrong and delighted when they don't. It works for me too. Annette - I can't cross my toes at all (darn taxol) I just tried lol. But I'll keep my fingers crossed for you. Best of luck tomorrow!

I just put the nasty goop in the fridge that I have to drink (yuck) first dose tonight...I wish it had some alcohol in it, that would give me more incentive to drink it!!! Hehe